News from China gives us even more pause to reflect on the access to medicines scenario. The situation in the US where there are no good excuses for unaffordable medicines, pales in comparison to this chilling tale of a patient whose actions to secure the life-saving drug imatinib mesylate at an affordable price, has resulted in his criminal prosecution.

To prosecutors, a leukemia patient named Lu Yong is a criminal involved in credit card fraud and a counterfeit drug scam. But to 1,000 fellow leukemia patients in China, Lu is an unsung hero for helping them get access to cheap, life-saving generic medicines from India.

The defendant, Lu Yong, was diagnosed with chronic myelocytic leukemia in 2002. He was prescribed Gleevec, a drug produced by Swiss drug-maker Novartis, which cost 23,500 yuan (US$ 3,775) per month, far too expensive for average Chinese families. Lu was even more depressed since the expenses of treating leukemia are not covered by China’s medical insurance system.

Lu later found out that India produced a generic drug which was comparable to Gleevec but which cost only 4,000 yuan, about 17 percent of the cost of Gleevec. He took the medicine himself and found it effective. Later, Lu began helping several thousand fellow patients buy the drug, since the purchasing process was difficult and some patients were not able to fill out the English purchase forms.

A bevy of news stories local and national have highlighted the ever-worsening situation for consumers , especially for folks who need so-called specialty drugs but also for the much larger segment of the population who use plain old generic medicines. While raising awareness is essential, mostly what we are seeing, is increased an amount of talk about the problem, but less often are suggestions being offered in the way of sustainable solutions. Shock over the price for new Hepatitis C drug Sovaldi was a wake-up call for policy makers and the public; it remains to be seen what will be prescribed as a remedy. Here’s a sampling of some more recent headlines:

Those who have been following the saga of the leukemia wonder drug imatinib mesylate or Glivec (spelled Gleevec in North America to standardize pronunciation) may recall that it was said to be the first medicine for which a global price was set. At the time of its 2001 FDA approval, the worldwide price was US$2400/month, for a base dosage of a 30 day supply of 400mg caps. Indeed, Novartis CEO Daniel Vasella went to great lengths to discuss and justify both the high price and the pricing decision in his subsequent infomercial-type book Magic Cancer Bullet: How a Tiny Orange Pill Is Rewriting Medical History. The Gleevec story is notable too in that the typical pharma claim that the price is justified by R & D costs, was refuted by researcher Brian Druker MD, who detailed how most of the initial work on imatinib was publicly funded and he had to convince Novartis to produce enough of it to begin clinical trials with CML patients. Dr. Druker has also gone on record to criticize the price being charged for Glivec.

Since then patients in wealthy countries mostly have been clamoring for their public or private insurance to cover the drug (and its second-line successors) not that something be done about the price that is exorbitant even in their economies. Novartis invested heavily in worldwide patient relationship marketing for Glivec , which has contributed to this phenomenon, a topic explored previously in this blog. In recent years, it has become much more common to hear complaints from US patients and even some of the big-box disease associations, about the escalating price of drugs like Glivec and especially for new biologics. But it has been rare to to hear demands that something be done about drug prices.

Novartis developed this drug in the 1990s. In the years since then the price of the drug has increased astronomically. Novartis must have paid their research costs long ago, but the price just keeps rising. Patients with CML leukemia are dependent on the drug to keep them alive. Our US representatives should work with FDA to pressure Novartis to reduce the cost

Setting aside the issue of misunderstanding that there are no price controls on prescription drugs in the US open market and that the FDA does not regulate drug prices, the petition is significant as a reflection of the increasing desperation of middle-class privately insured patients. They are among the majority here whose insurance status and/or income levels typically disqualify them for the patient assistance programs much touted by Novartis, whose global Gleevec sales generated $4.7B in 2011. Many US patients are now finding that the Gleevec price has skyrocketed at the same time that insurers are requiring them to pay a much larger share of its hefty price tag. The situation is quite simply unsustainable.

One person who signed the online petition shared:

I started taking Gleevec June 1, 2001, when it was first approved by the FDA. It cost $2400 for 30 pills. Now, these same pills cost $7367 per month. I pay $1035 per month for insurance to cover this cost. My insurance Co. gets billed for the drug. Why has Novartis raised the price so much? …

A look at Costco’s online pharmacy, which has a reputation, anecdotal at least, for offering “good value” retail prices on Rx meds in the US, found the following cash price for a month’s supply of an average dose (dosage is individualized) of 30 tabs : GLEEVEC 400 MG TABLET $6,264.59

And in the Washington Legislature, among several bills dealing with prescription drugs ( look for my comments in the future), for the third year in a row we saw Drug Companies Fight Take-Back Program for Unused Medicine. They claim that take-back programs, which they would be required to help pay for, would do little to stop abuse of prescription drugs and that environmental concerns about trashing meds are essentially bogus. Take Back Your Meds, a group of over 260 health organizations, police, drugstores, local governments, environmental groups and concerned individuals vows to keep up the fight.

Now more so that ever, learning of positive developments and new efforts of those working to make a difference, helps me to keep going . I share here with you some news of significance at the local, state, and national levels.